Trying to Catch a Break

I’ve been missing from this blog for months, I know. My heart (Skippy) seriously deteriorated, and he took me down with him. 4 months ago, I couldn’t lift my head off of the pillow. Skippy simply wouldn’t let me. I spent 2 days in February drifting in and out of consciousness alone in my room before finally managing to stay “with it” for long enough to reach my phone. I ended up in hospital, and I don’t remember the days that followed, mostly because I couldn’t stay awake, and when I could, I was very dizzy and spaced out. I wasn’t really with it enough to be scared. Retrospectively the whole thing is terrifying (it was also a very bad time to have PTSD due to events in hospital so horrific several people could lose their jobs if I spoke out about them).

Nobody knew what to do to help. There were ambulance rides between hospitals, and there was, it felt, a loss of hope. We took drastic measures, and we didn’t take them lightly. Because of delays through the NHS, we were forced to use the facilities of a private hospital. My family and I couldn’t afford that, but an incredible person I met through this blog started a fundraiser that covered 1/3 of the surgery costs. On 29th of March, I was put to sleep. I woke with a new pacemaker (Pablo). My heart now won’t beat for itself again. We’ve destroyed almost everything that could tell it to, and each chamber is now paced individually. I still struggle with this – I don’t feel I was worth the effort, let alone the cost. I have to pay my parents back, and the savings I had spent so long gathering to be able to fund a service dog are now nowhere near enough.

Three months after that surgery, I can walk again (not far, and my legs and heart protest with each step, but it’s still incredible). I am currently in Sheffield staying with a friend who remembers watching me have a cardiac arrest the second time we met. Prior to that, I finally met the incredible blogger who helped to fundraise my surgery, and she was so much lovelier than I could even have hoped for. Three weeks after the surgery, I got to see Bastille in concert. I sat with their friends and family, and got to meet the guys themselves.

On Thursday (12th July) I confirmed my place to study a masters in cardiovascular science at prestigious university in London. Research that has taken place over the past few years has given me the life I have now, offered solutions where there were none, and developed the techniques that played a part in that. But there’s still so much more to do in terms of research. I want to help make sure that other people’s futures differ from my past. If I can spare just one person from just one element, that’s enough.

I will be graduating on the 26th of July with a 2:1 (the lecturers who have contacted me, and medical professionals, and even my family, are impressed with that, but to me it is a bittersweet moment – I look at that grade and see a reflection of my health, not my brain). I had a mini stroke in May halfway through exams (as if there wasn’t enough stress already). But my health never has been, and never will be, and excuse to me. It isn’t me. It isn’t who I am. It will never define my capability. I’ve written thank you letters to the people who have played a part in getting me to where I am now – from police officers who found me on a train station floor 3 years ago, to lecturers, to cardiologists, to friends, and to paramedics who have carried me down flights of stairs but stayed in touch. My degree felt, and feels, as much theirs as mine. Some of them cried when I told them my news because they were so pleased. Most were stunned. We all celebrated.

I even celebrated as I was taken down to theatre. On the 12th of July I not only accepted my masters place, but that night I ended up in hospital. I had emergency surgery on Friday 13th, and there’s now an open hole in my abdominal wall that will take a couple of months to heal. My immune system bailed on me and let an abscess develop at my infusion site, and some surgeons had to step in because antibiotics aren’t very effective when your immune system is bailing. So I’m 140 miles from home, in a lot of pain, and being in hospital was very, very traumatic (was given none of my regular medications, including heart meds and pain meds, for the entire admission. Was given no antibiotics until the morning of the day I was discharged, they seemed to forget I have type 1 diabetes, had no idea how to use a portacath so pressured me into letting them stab me unsuccessfully…). But I am out of hospital. I am alive. I can walk. I feel beyond lucky.

While I was high on morphine post-surgery, and between the flashbacks and nightmares that left me sobbing and shaking, I decided I wanted a hamster. I found an 8 week old hamster that the lady hadn’t touched for 2 weeks and didn’t want. He didn’t have enough bedding and the cage floor was almost bare. Whilst high, I named him Dash Stille, and yesterday my friend took me to collect him/her.

I can’t afford a service dog, which would genuinely change my life so much. But now I also can’t afford a place to live, and my overdraft is currently paying for my food. My parents refuse to subsidise me until I at the very least have a job, but even lecturers at university appreciate that my health is nowhere near good enough to sustain any form of employment right now, and discouraged me from even thinking about employment (my lecturers also call me “Superhuman” and one has bought me a cape for when I graduate). I want to be financially independent. I really want more than anything else to have a job. I want my own flat, and to get a puppy and train him up as a medical and mental health service dog so that I can be more independent and my health will be more stable. I have to somehow pay my tuition fees but am hoping I can get a loan for that. I refuse to live off of the state, and I have no credit history so can’t take out a loan. There’s currently an open hole in my side that HURTS more than the nerve pain I have left over from so many heart surgeries, yet my financial situation is stressing me out more. Money shouldn’t make the world go round, but it does. I have been too unwell to attend a single lecture in my final year of university, I know that attending labs and lectures for my masters will wipe me out and a job on top of that will break me.

But I’ve got a little hamster guy (so I have a focus and a distraction and something dependent on me which means I have to stay on the planet no matter how awful the PTSD gets) and I am out of hospital and alive. No idea how to keep doing this. Left a lot of awfulness out of this post. Sure a lot more will follow it.

No way but through. Somehow.

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Dear Universe, I Submit

OK, I give in. You play dirty. You change the rules. You’re like an orca playing with a seal before you eat it… except you never make the kill. Your favourite time to kick is when I’m down. When things go right you shout JUST KIDDING! You feed on my hope until there’s not enough left of it to sustain me, and then you fill my world with people who tell me to think positively as if that will change your course. Normally, I can put up with your rubbish. But sometimes, when I’m really broken, I cry. And then, because I hate myself for crying and the shame is too heavy to bear, I curl up in a ball on the floor and deprive myself of the comfort of a chair because it feels like the floor is where I belong. And that’s how I know I’m really broken.

My mum brought me back to university. We were almost into my accommodation when we passed the front of the campus restaurants with big benches and tables outside. It was extraordinarily busy, and due to the anxiety I have about going ANYWHERE WITH MULTIPLE HUMANS IN IT while in a wheelchair, I was already pretty uncomfortable (being way below eye level and not in control of where you’re going is something I have yet to get used to in a large group). And then I was falling. More accurately, I was being catapulted out of the wheelchair – the old wheelchair that has had several users before me and now can’t turn left – the new wheelchair I was using has had to go back to its former user. Before I really knew what was happening, my mum was saying sorry and my knees were smashing into the ground. I just wanted to get out of sight and out of the way. A girl I’d never met brushed the dirt off one of my knees as tears welled in my eyes, and my mum tried to laugh it off at one point but felt very bad. And yeah, I’d been on top of things at uni. I’d switched off all emotion to get myself through. I was drowning but not yet drowned. Now I hurt in places that didn’t hurt an hour and a half ago. I’m on the floor. I’m all cried out (it took me about an hour to actually allow the tears to fall). Honestly, I’d been so… On it.

Would you be open to a truce? A ceasefire? I promise not to join twitter just so I can internationally mock you in a series of tweets. You already have pretty much every element of my health and I’m not sure what else you’ve left me that I could possibly give to you. But you’re welcome to whatever you can think of. 

I submit.

I don’t want to use the wheelchair. The frustrating thing is that my legs are fine, and they want to walk, and I want to walk on them and run on them… And Skippy says no. And we’re in a stalemate. And I am losing faith in medicine. I think I am losing faith in myself. I have had no idea how to carry on, no idea how to get through the destruction in my mind. But I know I’ll get through. With no idea how, and no real awareness that I’m even making process. One day I’ll just wake up and the world won’t feel heavy. And the awfulness will be behind me somehow. Because time drags you through. So it’s ok that I don’t know how to be. I don’t have to. (Trigger warning). I have fallen apart and the crumbled pieces have just been trodden on, but all those fragments are drifting together, being pulled to the other side of this by the passing of time. There’ll be an end. Even if it’s death. Even if that death is at my own hands, as it so nearly has been in recent weeks (don’t panic, I’m not going to do that, for starters that would involve getting up off of the floor). Something won’t let go. Something won’t give in. Physically I’m not struggling. The physical side of these health things is not what gets me. It’s the mental side. And emotions are not a conscious choice so anybody about to tell me to be positive… please don’t. If there was no positivity, there’d be no human left to write this.

My life at the moment is a situation I can’t control. None of it. And on top of everything else uni deadlines are arriving like rapid machine gun fire so I feel I should leave my friends to their work. I feel like I’m staring in the face of defeat, and I accept that. I accept the outcome and that I can’t change it and that this is what it is, but some stupid little part of my deluded hope is still fighting for its life… and it’s going to kill us both.

“Sugar we’re going down swinging” – Fall Out Boy, Goin Down

Alien

I have spent the past few months living privately, locked inside of myself in many ways, trying as best as I can to be nobody and nothing, to tuck everything in and scrunch my eyes shut so that I might pass a little easier through the nastiness. I have no idea why I have chosen now to stick my head above the parapet. Perhaps it’s because I no longer care if an incoming projectile rips it off. Perhaps it is because even though I want to melt away, the feeling inside of me is growing, and it wants to be heard… and I need a little help to shoot it down. Either way, here we are. Or rather, here I am. Exposed (and by that I simply mean… present).

Since my second year of university I’ve laid on a table under a bright light and the hands of a doctor six times. April. June. July. August. Twice in September. Each time I thought and hoped it was the last time, and so far it hasn’t been. My last procedure was on the 29th of September. I went to a clinic appointment unable to hold my own head up (three days after we’d tried to reprogram my pacemaker and see if that helped) and a few hours later I was at the start of a 5.5 hour unsuccessful attempt to make my rebellious heart behave. It left me… With a very sore chest. Unable to sit up. Unable to stand up. Unable to walk. My heart was really, really unimpressed. I’d gone back to university in a wheelchair, able to walk short distances and occasionally leave my flat under my own steam. I suddenly couldn’t even lift my head without the world spinning. Since then I’ve had to use a wheelchair to go everywhere. The physical symptoms don’t bother me. I sleep a lot, I am exhausted after an hour of being out (despite the wheelchair), I can’t walk far at all, I get frequent palpitations, my vision fades to black, oh, and Skippy hurts to an alarming degree at times (that’s settling down). That I can handle. My body has imposed clear limits, and it doesn’t give me the energy to fight them. It often doesn’t give me the energy to get out of the wheelchair to get to bed, or to eat, or to lift my head. I’d rather not waste what precious little energy I have on worrying about how I feel physically. I have thoughts about it, but they aren’t for here. My summer has involved an awful lot of unpleasantness, weeks in hospital, multiple admissions, mental health crises… Things I don’t want to remember, let alone share.

Before I go any further, I want to explain something. I was bullied as a child. First because I was clever, and then because of my health issues. I am painfully shy, and I hate being treated differently because of my health. I hate standing out, I hate attention of any form. I learned at a young age that being different was very bad, and I try to hide away in plain sight to avoid my differences being sharpened and used as weapons against me. I have, for a little while, struggled with being in large groups of people. I am insecure, I am self conscious, my self esteem if quantified would be of a negative value. I hate myself, I feel like I bother everyone I interact with and so I try to do everything alone out of guilt and self loathing. I do not value myself enough to prioritise my own needs or feelings. I play down everything. I hide. I hide how I feel both physically and mentally, to blend in, to fit in, to wrap myself in that comfort. I am used to nobody having any clue how lousy I feel. I am used to being able to sit in a lecture hall with my peers oblivious to the catastrophe going on inside of me, or the fact that unless I attend a hospital within a few hours I’m not going to wake up the next day. I smother layers and layers and layers on top of any weakness, to compensate for the fact that people associate me with vulnerability because of my health issues.

Now, I am not the first person to ever be in a wheelchair. I am not the only person on my campus to be in a wheelchair. But I feel like an alien. People are not subtle when they stare. I wheeled myself across campus the other day past people wearing giant foam breasts to raise awareness of breast cancer, and I was the one people looked at (because y’know, society). People I have known for a long time suddenly treat me like a baby. Strangers treat me like I am incapable or even stop me in the street and demand to know why I am in a wheelchair. I can’t wheel myself places because my heart protests and I almost pass out, so suddenly I need people, I have to rely on people, I have to ask for help, and I have to let people help me or I can’t get anywhere. I have no independence at all. Since I was a child I’ve always been told by my doctors that I am just like everyone else and for the first time in my life I feel like… An alien. And I’m not. It’s just two wheels on a chair and if you think about it that’s kind of cool. But after the first few stares my brain suddenly ran away with its insecurity. Suddenly I cannot hide. I can’t hide my vulnerability. I have no choice but to face it. And I also have no choice but to wear it publicly. I cannot accept it, but now I also cannot escape it. And I cannot deal with that. It feels like the whole world is staring any time I go outside. People treat me so differently. And so… I became very, very reluctant to leave my flat or go anywhere on campus. London is not made for wheelchairs. It really is like being in space. And I feel like an alien every time I step outside.

Shame floods me. My skin does not crawl with discomfort, rather it writhes while I shift uncomfortably inside of it, trying to shake it off and cease to exist. When my friends are pushing me, I smile and lose myself in their conversation, with Bastille playing in one headphone to distract me from the situation I am in. But at university, that bubble falls apart.

With all of the above in mind, it is story time.

After three (I think three anyway) weeks of university, I still had yet to attend anything. I’d just had a procedure on my heart, which had ruined everything, and that should have been my biggest bother. But it was out of my control, and I realised and accepted that and let it go (I think. Maybe I’m just totally dissociated. Anyway). We had a tutorial at the medical school to discuss a case study we had been given to research and prepare information on. Attendance was compulsory, so not only could I not hide my vulnerability, but I could no longer hide that exposed vulnerability from my peers. I was going to have to face humans, and that was a big deal.

Firstly, while it is a 15 minute walk to the medical school, the pavements to get there are bumpy, the drop kerbs are at places more like cliffs, and even those pushing me commented that it was not appropriate for a wheelchair. There are buses, yes. But around here the buses are packed full of people. So many people that, because they refuse to move, there is no way you can get onto the bus with a wheelchair. And if you do, there is usually someone there with a pushchair who simply refuses to move, so everybody gets very grumpy at you until they collectively make you leave the bus so they can be on their way. None of the tube stops round here even have escalators, so a lift is far too much to ask. It meant I had to bother someone, knowing that pushing me all that way was not only an inconvenience because they’d have to get me, but also because it was going to be like a gym session (their description of the event, not mine).

I swallowed my self loathing and managed to find a very understanding human who was more than willing to help me to the medical school. Two, in fact. I thought getting there was the hard part. Uni is wheelchair accessible, it’s a medical school so y’know, they would obviously have thought about access for disabled individuals. Great! Until we got to the main entrance and for the first time in three years I noticed the flight of steps to get in the front door of the building. There was no sign for a disabled entrance. No other doors. No lift. Just steps. One of my friends went in, because she didn’t want to be late for her tutorial. I died a little bit inside, but was kind of relieved to not have to see humans. I told my other friend to leave me. She didn’t. We stood there staring at the mountain between us and the medical school, until someone on his way out happened to know that there was a ramp around the back of the building. So we set off. We found an open gate some way around the corner, and assumed, as it was the only gap in the wall, that it must lead us to the wheelchair ramp. I was so embarrassed about all the fuss, about standing out, and about the trouble to my friend. I was relieved to finally have a route inside.

We wandered around the back of the medical school, found the ramp, and proceeded to the door at the top of it which was… Locked. Never mind, we had access cards. My friend scanned the card reader. Nothing happened. She tried again. Then she began hammering on the door to the people we could see through the window. Our fellow students could also not unlock the door. Random people I had never met were staring out of the window at me and trying to unlock the door. I died a little more inside, and wanted to cry.

Eventually someone somehow made the door open. We went inside, only to realise that neither of us had any idea where the lift was. There is a very large and pretty grand staircase in the middle of the old building, but you have to go up 3-4 flights of stairs to go up one floor. There was no way on earth my heart could do that, and no way I could be carried. By chance, a passing member of staff happened to think she’d seen a lift once through some doors, and another friend said she knew where it was. We found it, and went up to the designated floor, where my other friend took over pushing me.

We entered the corridor and it said that room number 1.21-1.27 was one way and 1.27+ was another way, or whatever. My room number was pretty high, so we went the way the sign told us. The doorway was so narrow that the wheelchair barely fit. The corridor was wide enough for it and nothing else either side. People piled in behind us, because there are a lot of students and not a lot of building, and we walked along the corridor towards the room. We were one room away and then… steps to get to the other rooms. A member of staff told us to turn around and go the other way, where there was a ramp. I was so embarrassed. There wasn’t really room to turn around. In turning, we ran over her foot and almost took out someone else. Everyone had to reverse out of the corridor so we could fit by. All eyes were on me.

We went the other way round and found the ramp. The corridor was stuffed full of people, who had nowhere to stand but on the wheelchair ramp, meaning I couldn’t get to my room even though my group was already inside. I wanted to melt away, but my friend also had a place to be so she shouted “Look out people, wheelchair!” I wanted to cry. She then threatened to run people over if they didn’t move, and because they had nowhere to go, she ended up following through with this idea, and running over several feet and hitting several legs. People looked down at me with shock and outrage as they were rolled at and over, and I just turned my music up even louder and tried not to cry.

Finally we got to the room, after struggling to get through a huge heavy fire door. We knocked on the door and the tutor opened it… And the room was tiny, there was barely any room for the desk and chairs, let alone me. She made people re-shuffle and I felt so so bad for making them move. I spent the next hour trying to get over my patheticness, but I was dreading leaving.

Afterwards, nobody I knew was going back to the main university campus, so I had no way to get back and was too exhausted to go to our workshop that afternoon. Eventually my friend went out of her way to go back to the main campus so that I could get home. She has her own health issues, and walking will have exhausted her I know, and so I felt so guilty. I got back to my flat, shut the door, and crumbled. I felt very, very different. Wheelchair accessible and actually practical are very very far apart.

I was too unwell to attend anything else, so I didn’t. I met with my personal tutor last week, who completely changed the way I see myself and my mental health, and understood my wheelchair issues via his own personal life. But then yesterday I had a meeting for a group assignment we are working on. The night before, I panicked at the thought of having to leave. I cried. That morning trying to get up, each time I thought about leaving my flat I curled up under the covers in a panic, trying to literally hide from everything. It took me an hour (and the music of Bastille) to leave my room. I made it to the door of my building, saw other humans, and froze. Like… Completely freaked. I couldn’t do it. I’d already mentioned my anxiety to my personal tutor, and he got it. He understood it. But suddenly it was controlling me. My group, who I had only met once before, came to rescue me. We went to the newest building on campus.

As it was new, it had two wheelchair entrances. Amazing! Both are behind huge support pillars, so you have to be good at steering. Neither of the doors currently work. So there’s that. On our way in, a member of staff managed to help figure out the door. I spoke to my group about my anxiety and things, because I was basically having a breakdown at this stage, and they told me to contact my personal tutor. So I sent an email about how our university seems to be as accessible to disabled students as the International Space Station is to the average human, and the effect this was having on me (I had stopped sleeping, was panicking and crying at the thought of attending the workshops I had to go to the next day – aka today, and I was terrified of people and public places). Satisfied that I’d taken a step in the right direction, we eventually finished our meeting and went to leave.

But there was no member of staff. Also, this time the “out of order” disabled doors would not open at all. Neither of them. We pressed the button, my friends tried to rip the things off their hinges, random other humans stopped to help. So much fuss, with me at the centre of it… I was mortified. The only way out was a revolving door. I’m not sure if you’ve ever tried to get a wheelchair out of a small revolving door, but we very swiftly learned why there is an alternative entrance. It was not easy. It was not dignified. It was not subtle. It was not great for a shy person.

On getting outside, my group all went one way to get the tube to wherever they had to be, leaving me to somehow make my way across campus, which I have noticed is on a very very slight hill. I figured I could wheel myself. I made it maybe 20 metres before I almost passed out. By that point, I was in front of the science building where some of my friends were in lectures, so I stopped because I had no choice, and decided I’d just have to wait. It was 3:05. Their lecture finished at 5. There were a lot of people walking past and I was stopped in the middle of nowhere so they at least glanced but mostly stared (or at least that’s what it felt like). I wanted the ground to open up and eat me. It started to rain. I started to cry. For the first time in a long time, I wanted to die. Really pathetic. Totally ungrateful. Totally uncalled for. But I was more serious than I ever had been. I made a plan of how I’d do it, even calculated how much of an overdose it would take to be untreatable. And I committed to it. I was genuinely going to do it. I sat there for an hour and a half, until my flatmate realised the situation, told me I was an idiot for not saying something, ignored my statement that I didn’t want to bother him, and made his way across campus to rescue me. He found me listening to Bastille, and I thought I’d be called pathetic and stupid but people just said that the entire thing was a horrible. I was planning to go back to my flat and take all the medication I have. Instead, I got into the room, thought about doing it, and that was enough of a comfort to stop my tears.

My friends pulled through. They were outraged at the university’s provisions, and aware of how shy I am and how much I hate bothering people, and therefore the effect everything would have on me. One friend came round. Another video called me. My flat mates took me to buy alcohol because all I wanted was alcohol or painkillers so strong they might numb emotional pain too. Instead, I bought comfort food. My other friend spoke with me on the phone until past midnight.

I made it to my workshop today after several freak outs and an hour of trying to persuade myself to leave my flat again. We went into the lecture hall and I looked up to see people looking at me. Of course they were, I was at the front of the room and they were probably curious. But shame flooded me and I just wanted so badly to blend in. There was nowhere for a wheelchair in the room. I could have got up and sat in a seat, but I was scared that people would think I was faking using the wheelchair, so I stayed put. The only desk I could have used was a stand alone desk in front of everyone facing all of my peers. Thankfully, the lecturer sat at it. I tucked myself on the end of the front row, which meant I had to sit across the front of the stairs and block that passageway. In my mind everybody’s eyes were on me and their collective gaze made me squirm and want to hide away. I came home and hid. I’m still hiding. I don’t ever want to leave again.

I have a workshop tomorrow at the other medical school campus 3 miles away. Buses aren’t an option, and neither is walking. The taxi fare is £39.50. Each way. The university said they would try to fund that if I could provide a doctor’s letter, but my cardiologist has not responded. And I’ve developed crippling anxiety about going out in public places so… I’m not going. They may as well have set me lectures on the International Space Station, because it feels about as feasible for me to get there. I feel like I’m looking down on the life I used to have but I’m thousands of miles away from it. Hearts are not appreciated enough. If yours works normally, just… treasure it.

A lot of people would be ok with the situations above. A lot of people won’t see anything wrong with them. You probably think I’m spoiled or ungrateful or stupid or pathetic or all of the above. I think those things of myself for feeling this way too, so you aren’t alone. I went to Bangkok in the summer. That was not wheelchair friendly at all, so I couldn’t leave the hotel and the heat also meant I couldn’t actually leave the bed because of my heart. Plenty of people have it far, far worse. I am also not the only person on this campus in a wheelchair. But I’m not handling it right now, and I’m really ashamed of that. I just needed a place to… words.

Thoughts, anyone?

It Shouldn’t Be Impossible… So Why Is It?

I’m not entirely sure how to start this post or how to stop it being a mess of word vomit on your screen, so I will apologise in advance and then… begin.

I fell asleep to the sound of Bastille last night, which means that it’s also what I woke to after a pretty terrifying (and hospital-themed) nightmare. This was a good sound to wake up to, because it instantly pulled me to somewhere safer. I hoped that after some sleep, my mind may be better equipped to fight the fires razing it to the ground; but hope, as I have been taught by experience, is often far above reality. 

The alarming downward spiral my brain hopped on last night was met with an incredible level of kindness and understanding by the staff. Nobody has ever seen me like that – even myself. The fact that it was a thing at all was in itself highly distressing to me. But among all the feels, I found words to describe how overwhelmed I was, and after being told that it was ok and understandable and brave and other such illogical responses, those words eventually filtered through to the next shift of nurses (as did news of my tears). It also reached the doctors. The consultant on the ward this week is also the clinical director. Upon learning of my overwhelmed state and realising (as everyone else already had) that a whole group of doctors walking into my room was going to be way, way too much for me, he wandered in by himself and explained that he thought that would be better. When I was in hospital before, after several doctors did awful and sometimes negligent things which traumatised me and on occasion left me in ICU intubated or almost dead (both physically and eventually emotionally), my paediatrician used to make ward round skip me and walk in alone so I wouldn’t be overwhelmed. My brain isn’t sure how it feels about this parallel. 

He stood at the end of the bed and spoke softly, kindly. Like a human. My brain pedalled desperately in an attempt to seize its opportunity and find its voice, but the chain kept slipping. He confirmed what I was told yesterday – the minor surgery today has to happen. He said I may be here a long while. I tried to process that but still the chain kept slipping. I couldn’t words. I tried not to cry just at his presence and at the same time found a huge amount of comfort in it because it meant a plan and an explanation and… reassurance. 

He asked me if it was ok to go ahead with it, and I said yes. I said yes in a voice that wasn’t mine – it was quiet and montonous and strained and I was dead inside. He asked if today was ok, because it needs to happen as soon as possible. Again, defeated and unable to fight myself, I made what I knew was the right call. I said yes. Because logic is still there. Logic knows that I need this procedure and I need these drugs. It isn’t that I’m not thinking positively or logically. It’s not that any of this is a conscious choice because I’d choose the procedure – I did. 

Consciously I force my thoughts to be positive and logical and do what I know has to happen, but subconsciously this huge tidal wave gathers and swells and sweeps all that away. Consciously thinking things to override feelings all the time is not only ineffective but exhausting. I didn’t have the energy to explain how I felt. The pedals were still slipping and I couldn’t find words and I didn’t have the energy to reawaken my emotions. So I said yes, just like I did with the blood test yesterday (and even though I freaked, logic made me hold my arm steady and let the doctor feel for veins as subconsciously I collapsed – thankfully the latter was obvious and noted via the involuntary expression on my face and change to my body language and voice, and she decided it was too much for me to deal with then). 

He left the room and the chain stopped slipping. My brain pedalled so fast that it swiftly arrived back where it had been the night before, and tears occurred. This was not a good time to need IVs. My nurse walked in, concerned because he had been told about the emotional effects of everything. He told me he couldn’t even imagine what this situation is like, but that tears were very much an understandable part of it and that it made complete sense to him. And then he went to draw up the IV that makes me feel like death. I mean honestly, it makes me feel so unwell I can’t get out of bed, it leaves me unable to look at light and with awful eye and head pain, and my body generally just rebels against it. Physically my current situation isn’t hard, it isn’t unmanageable – I can cope with the pain and all the rest of it. But I cannot cope with the mental impact of all of that, especially not when the awfulness is added to by EVIL IN IV FORM. 

He offered me IV pain medication. Logic told me that was a smart idea because my chest hurts A LOT. But physical pain is something I’m used to, something I can handle, something I can live with (if only the emotions it induces were easier to handle). I wasn’t bothered by the pain. I was dead inside. And I still just couldn’t. That was the first thing I refused. Then two more IVs. Then EVIL IN IV FORM, which I actually need to bully my body into better health. I tried so hard to say yes, I’d sometimes even say it and then something else snaked around my logic and choked the life out of it and I’d just collapse under its weight and sit there torn – silently trying not to let go of the right thing and desperate to be able to go through with it but being pulled back by something raw and animal that I cannot control. 

I honestly don’t think I can do this. I don’t think I can go through with it. 

Writing this has been interrupted by a visit from a diabetes specialist nurse who I can only describe as a LEGEND. He’s awesome and pops in for a catch up when he’s doing the ward rounds because type 1 diabetics are very rare in this hospital (there are currently 1 or 2 of us among a list of patients almost as long as his arm, and the record is 3 type 1s at once). And then the speech and language therapist walked in to discuss the inflammation in my throat and how I’m going to get nutrition when I am unable to swallow any consistency of food or drink due to the after-effects of being intubated (which is why they are reluctant to intubate me for the procedure today). Talk turned to NG tubes and again I know that’s a smart and sensible idea so logic tried to engage, but the pedals in my mind slipped again and it hurt and I was like “I’m so sorry I can’t do this today. I can’t do anything today”. I refused another thing. 

The nurse keeps coming in to give me EVIL IN IV FORM and I literally just cannot even let him prepare it. And I don’t know how to go through with this procedure. It could mean bad news if it goes ahead and I can’t deal with that. I don’t know what’s wrong with me as a human to make me behave this way. I don’t like that I can’t control it and that it speaks over the logic and appreciation that I am consciously and deliberately aware of. Have you ever made the right call and not been able to take it?

They’re pushing me and pushing me to have EVIL IN IV FORM because I need it and it can cause all sorts of problems if I don’t, and they are giving me logical arguments and going on and on like I’m clueless. It’s too much. My brain is making that argument too all by itself, but something else just shouts it down. They don’t appreciate that, they go on an on and I’m so terrified of medical staff because of my PTSD that it feels like bullying even though it’s concern and kindness. They see this situation without any of the emotion, without living through the things I have somehow lived through, and they cannot possibly understand that it isn’t as simple as the black and white scenario they present and push and push. I feel trapped and pressured and even more overwhelmed and so now I’m just sat crying as I write this, wondering what on earth possessed me to post this and feeling the need to apologise for doing so. I feel so helpless. 

I don’t know how to do it. Any of it.

I’m so broken I don’t even want to run away any more. There’s none of me left. They’ve taken it all. I’m gone.

Just Another Loop

I’m on an emotional rollercoaster at the moment, and yesterday was the sort of day which I can only describe as another loop on the track. I woke up knowing a date for my surgery (22nd June, exactly a month since my heart wrecked the awesomeness of a night at a Bastille gig by behaving in a way it NEVER HAD before) and also knowing that despite only finding out I needed it two weeks ago, the surgery ideally has to take place within the next week. By the time I went to sleep (or not, because it’s 2am the next day and here I am trying to sort my head out) I had experienced the pure BRILLIANCE of hearing the new single from Imagine Dragons and the long awaited new Lorde album, lost most of the day to a rather involuntary sleep (Skippy rendered me dizzy and unable to breathe. I couldn’t human, but only for six more days!), and then been hit by the pure DESPAIR of being told that, thanks to the recent massive computer hack, the hospital is still 350 surgeries behind so can get me a theatre team but… no theatre! Goodbye surgery date. Hello void I thought I’d crawled out of. This, right here, is why I usually never let myself hope – because it sets me up for a fall, and the landing hurts A LOT.

Basically, it was the kind of day where you look out of the window and wonder how the world is still turning at the end of it, because in your mind molten rock is raining from the sky and everything you thought you’d managed to build is falling apart around you. 

My cardiologist is really upset that we’ve been forced to go private to get the surgery in the time frame we need it to happen, but the already overrun NHS part of the same hospital where he usually does all of my treatment has a shortest wait of about 8 weeks because of the huge backlog with even emergency surgeries. I felt awful about my family having to gather a sum of money we don’t have. It felt morally wrong and it troubled me deeply. I’d been terrified of the procedure itself, knowing what it will do and how significant the impact will be (the scientific part of my brain is ALARMED at what is taking place). And then there were all the what ifs: what if it doesn’t work? What if something goes wrong? What if it kills me? I feel personal pressure for everything to go ok just so that money isn’t wasted. 

I’d been spiralling into this sinking feeling, and when I was given a surgery date it was like someone cut all the bad stuff away. Maybe the not knowing was the hardest part. I like a plan. Don’t like being left in suspense with things as important as my future. So I was happy. It felt like flying. And then after one phone call it felt an awful lot like falling, all over again. 

I just stopped. All of me stopped. Like in a film when someone is shot, and there’s this moment where they grunt and pause and just clutch at where the bullet went in – you don’t see any blood, they don’t fall right away, they are winded and they hunch over with this kind of startled pained look on their face, and their brain is all “WHAT. WAS THAT.” I’m still stuck in that moment. For a while I was so restless, feeling so many things but unsure what any of them really were because I was too overwhelmed. I wanted to go for a walk to clear my head, but since that Bastille gig I’ve been housebound. I wanted to get away. I tried playing music, but it just became a noise layered over the top of the chaos in my head.

The situation seemed too good to be true and it was (just like the crazy idea of having one normal night at a Bastille gig where I thought I could forget about my heart, and the surgery a month before that which was new and we thought would tame my heart). But it isn’t all bad, and at some point when I stop reeling from the sucker punch and stand back up again, that’ll sink in. I’m lucky. Always lucky. There are people far worse off and so my conscience tells me I’m a complete arse for reacting in the way I have and refuses to stop focussing on everything that it is seeing on the news at the moment. But being scared is a draining process. Waiting is draining. Hoping is draining. Losing hope and finding it is… Draining. Almost dying takes a huge emotional toll, even though it’s happened so many times (but the last time was only just over a week ago and I still haven’t wrapped my thoughts around being as ok as I am). I can’t handle the not knowing. It’s my life. My chance to have a life. And every time I think we’ve found a way to tame the beast it breaks its chains. It feels like a cycle (this also happened with my last heart surgery).

I think what got to me the most was that as I laid there today, my heart hurting just to remind me it was there, dizzy, struggling to breathe, exhausted, eventually unable to stand and then unable to stay awake as things started fading to black over and over… I felt so physically unwell that I didn’t know how my body could endure that for another hour, and the thought of six days between me and any potential relief from that exhaustion and incapability and (literal) heartache seemed like such a long period of time I almost cried… Six days felt too long. Six days felt too long. 

I don’t know why I’m posting this. Probably because the comments on my last post were very helpful, my family will be having their own reactions to this situation (and we don’t talk about our feelings anyway) and only three of my friends know (and are therefore on this rollercoaster with me and a little lost for words). Hopefully when my cardiologist is back at work on Monday we’ll have some better news. Although Monday marks the start of what should be “surgery week” so that’ll be a little tough. I’m lucky and I’m grateful and I’m fortunate. I’m also reeling and hurting and lost. So excuse how pathetic I’m being right now. At this exact moment, I don’t know how to be. I can’t sleep. I can’t think but I also can’t not think. My brain is full of feeling and devoid of all emotion at the same time somehow. 

Still, no way but through. 

I’ll order pizza for breakfast. I’ll cuddle my dog. I’ll listen to Bastille. I’ll watch some Julian Solomita &/or Jenna Marbles YouTube things. And I’ll wait for my world to start turning again. 

The Deep End

Sometimes it’s difficult to know how to start these things. So I guess I’ll start right where I seem to have found myself lately – the deep end. Bring a boat, or you may drown.

On the 1st of June I went to see when my next surgery could be done, and what damage the procedure at the end of April had caused. They’d go in through my chest the next time, I thought. 50% success rate. Risk. But a manageable one.

Only he didn’t say that. He said sorry.

He confirmed that the procedure in April had not been a success. He then said that the surgery I had pinned all of my hopes on was way too risky for him to attempt, even if he went in through my chest. When he told me why, my logic agreed with him. He said there were no medications left to try. That wasn’t an option. No conventional or routine surgery was an option either. And he said sorry. And my heart broke into a thousand pieces, not because of all the other implications attached to that, but because I just really wanted to make it to another Bastille gig, and I knew that meant I’d never be well enough to go. Whatever happened at the gig I went to in May seems to have marked the start of a decline so severe I’m now housebound. Most days I can hardly stand. I am too dizzy to lift my head, and don’t have the energy to do anything. I am too breathless to eat, lungs crackling as fluid decides they are a great place to set up camp… My vision fades to black. I spend most of my days in an involuntary sleep. My cardiologist looked at me as we discussed this and just said sorry.

And I watched it all go. Goodbye degree. Goodbye… Everything. I sat in that room and lost it all. I sat, the two health professionals talking to my mum, and I have never felt so lost or alone. Nobody saw me cry. I was grateful for that. My mind went somewhere nobody could reach it.

But my cardiologist is a DUDE. He has done some ground-breaking research in his career and still likes to push at the edges of what’s possible and what isn’t. For example, the procedure he carried out at the end of April was so unheard of I couldn’t find it on google, and the other cardiologist I discussed it with told me it couldn’t possibly exist or be attempted because it would kill me (he wasn’t far off. It’s ruined me a little bit).

I could tell by the look on his face that it was going to be a decision I shouldn’t make lightly. He told me there was one more thing, that this really was the only thing left to try. He didn’t know if it would work. It wasn’t something he wanted or would usually ever think of doing in someone so young. But he was offering me hope in the middle of a void, and before I even knew what it was I took it. I hung from his words.

One thing left to try. I’m doing a degree in biomedical science, so I knew what he was talking about, and I couldn’t actually believe what he discussed was possible. It is, by no means, conventional, but maybe one day it will be. So I listened. And I was terrified. But I was desperate. So when he asked me what I thought, I said yes. Not quite that quickly, and not quite in those words, it was more of a “If you’d told me about this a month ago I’d have told you no way. Now, I want to set my heart on fire. Don’t really have much to lose.” But he told me to think. He told us to go away and to email him. And he just kept apologising.

Things got more overwhelming than that. We decided I needed the surgery within 3-5 weeks of that conversation. The NHS emergency wait list is 12 weeks. The private waiting list doesn’t exist. They use NHS theatres in the evening, have their own ward in the same hospital, and it could have been done within days. He told us he didn’t want us to have to pay. He said sorry over and over and said it wasn’t fair and it was wrong, and you could see that the idea of it made him uncomfortable and very bothered. But we admitted there wasn’t any other option. I couldn’t really speak after the appointment. My mum talked a lot. I put in my headphones and played bad_news quite a few times, until the emotional bottleneck in my mind turned into a torrent of feels.

Turns out that if I wait for the NHS, the surgery cannot happen until NOVEMBER. So that made the decision for us, I guess.

I’m not going to name the price here, but it’s way, way too much. My family can’t afford it. The money will come from my uni fund and goodness knows where else but they say that doesn’t matter, they’ll find it. Finances are going to become very tight. And my self hatred makes this a huge moral dilemma, because I cannot justify that expense on me. It’s only me. When you struggle to attach any value to your life at all, seeing such a large one after a pound sign is very, very hard to handle. I already owe my family enough. I already felt guilty. This guilt became bigger than me. It crushed me. It was almost a physical ache. I asked them not to pay, I told them not to do it. We can’t afford to but we also can’t afford not to. What made me feel even more guilty is that I am so desperate to have the life that this procedure will allow, that despite all of that I still want it. I hate myself and I hate this situation and it’s just… Breaking me.

In order for me to have a life, I have to wreck my family’s… And they will always, always come first. So I found myself in this weird situation. With hope – hope I daren’t take but couldn’t let go of – incredibly close to ending my life. Genuinely I did, to save them the money, to stop the guilt. Because we don’t know if this will work. What if it kills me? It’s going to kill the part of my heart that tells it to beat, what if I go down with that ship? Ideally I need to go into hospital 24 hours before the surgery to be stabilised with IV medication, but we can’t afford that. So what if I almost die afterwards from another health hiccup like last time? What if I need intensive care? What if it all goes wrong? Suddenly this huge value has been attached to my life and I just can’t handle that. I can’t understand it. Morally, this all just feels so wrong.

In the middle of all that, I almost died again. I was meant to be seeing Imagine Dragons in concert that night, but was already too unwell to go. Skippy started a riot, and my blood became acidic in response. I found myself in a resuscitation unit, concern slowly rising, deteriorating after treatment. My heart was such an idiot that my veins were too empty to find. They stabbed at my arteries instead, and even they were hiding. I thought that was it. Honestly, I thought I was going. My mum put in my headphones and played me Bastille, and my mind went somewhere else – she witnessed the power of their music, and from that point onwards people realised the headphones became as vital to my survival (mentally) as the IVs (of which there were 4, and at one point more I think). I lost the ability to move. I barely had the energy to breathe. I drifted off to the sound of Bastille, becoming unconscious and totally unresponsive as my body bailed on me. Panic happened, but not in my brain. I lost myself in the songs. The critical care guys got involved. I woke the next morning unable to lift my head without the world going black (my blood pressure was way, way too low despite a lot of fluids, which meant that rather than me being dehydrated, Skippy was just too knackered to play fair). I told them I was leaving that night because I needed to vote. I did. They had to wheel me to the main entrance because I couldn’t walk, and just crossing the road to go vote made me almost pass out. But hey, I voted. And then I tried to wrap my head around how on earth I’d made it through.

Awful, tragic things are happening in the world, and I always shut down my own thoughts and feelings whenever I hear of them. I have no right to hurt over my situation, I have no right to cry for it. How dare I? Given everything that’s gone on in my home country alone recently how dare I? And yet, the sinking feeling will not stop intensifying. So I just put in my headphones and go somewhere else.

Upon reflection, should I have gone to see Bastille that night? That’s tough, because none of us had any idea Skippy was going to do what he did. He’d never beat like that before EVER or done what he did then. I’m mortified that it happened there. Waking up from 10 minutes of your heart LOSING ITS MIND and seeing Bastille on stage as you open your eyes is kind of a good way to wake up though. But I’d rather have remained conscious. I feel awful for all the fuss on that night in that venue and everywhere since (especially the trouble taken by two members of Bastille and their management to make me a video).

I don’t know where I’m at.

My surgery should hopefully take place at some point next week, and I only found out I needed it two weeks ago. I want it more than anything in the world, and I really don’t. The main reason I want it is because I want to be around and well enough to go and see Bastille again at some point in the future, because a) I am determined that my heart won’t win this one, and b) I’m kind of living for that. Music is powerful, live music is kind of BEYOND magic.

There’s been a lot more going on, but I don’t want or know how to share. Please understand if I don’t post for a while. Sometimes that means I’m on a rollercoaster I don’t know how to get off of, and I just need time. It probably also means I almost died again. Today it also means that everything keeps going black (or Skippy drags me to an involuntary sleep) and then I wake up mid-sentence with no idea where I was planning to go with this post next, hence why blogging is also very confusing and difficult and takes FOREVER right now.

I have no right to complain right now I know, and I hate myself for feeling bad but I just can’t turn it off so please forgive me, I’m trying to get a grip and I just keep spiralling downwards. I’m more upset about London today than for myself, and I hate that my mind still dares to let its thoughts drift to my current situation. The world needs a reset button I swear. 

No way but through.
P.S

One of the most incredibly humans I have had the pleasure of meeting has a little company that makes films, and she is so lovely I recommend checking it out! She’s proof that young minds can create some pretty powerful things, and the idea for her first short film touched on several important themes (I’m actually going now I promise).

“An Act Of Kindness”

I’m kind of embarrassed to say that things lately have been becoming increasingly… tough (I hate the ‘t’ word, because I’m not sure I’m justified in using it to describe my circumstances EVER). It feels as though I’ve been watching every element of my life slip away around me, with not enough hands or enough strength to catch the parts worth saving. I’m always very aware that I’m lucky (incredibly so) that my life isn’t awful. There is a huge capacity for it to have been much, much worse. I always use that attitude to drag myself up out of the places my mind gets stuck, tell myself I’m an ungrateful idiot, and move on. But things pile up. Normal 21 year old things, the impending doom of exams that I’m far too unwell to prepare for (and may not even be able to sit, as they are only next week), a crime committed against me in my own home, the huge emotional mess that existed before and after that, family disasters, and all the health stuff etc. etc. Not the end of the world, and maybe manageable one at a time if I wasn’t so mentally exhausted. But I kept going at the thought of heart surgery, at the thought that it might fix everything and I’d wake up an entirely new person.

For most of yesterday my heart rate refused to dip below 150. With all the marathon headlines floating about, Skippy (my heart) seemed to think we were running a marathon. I slept most of the day, not by choice, but because I couldn’t fight it. I couldn’t catch my breath. Eating was a strenuous exercise. So strenuous in fact that I almost passed out in my dinner. I was a dizzy heap of pathetic incapability that infuriated me. Skippy just said no. He hurt in extraordinary ways. My left arm went dead. I could barely function. Surgery was not meant to do that to Skippy. It was meant to appease him and every aching moment of his freak-out was an anchor pulling me back to the reality that things hadn’t worked. In fact, things were significantly worse. And that… That was a bitter pill to swallow. It made all of me sink.

Then I got a message. From Portsmouth Uni Friend. She told me she had a surprise, and sent me a link. To this. A small charity gig, featuring none other than Bastille. In Islington (an area that just reminds me of the hospital Skippy and I used to go to near there). On the 22nd of May. She knew how much the music of Bastille has meant to me through some pretty tough times, what it stood for, what it got me through. And she said, “shall we go?” And then another friend messaged, saying she knew how much that music meant, and she’d even buy my ticket. With the track record of things that seemed too good to be true turning out to be… hopeless hoping, I didn’t think anything would come of it.

So I went to bed. I was up all night, and I was scared. I stayed up until 3am, with Skippy racing the entire time, feeling almost as tired as I was in the end. For some reason, if I sat up and turned the light on, I was sure it would stop him from stopping. It was irrational for me to think I might never wake up, but after surgery Skippy is a beast I no longer know. He’s different now. Alarmingly so. I drifted off. Palpitations woke me from sleep. Chest pain stopped me drifting back off. Over and over again. I’d sit bolt upright and just hold my chest and oddly enough… Talk to the freaking out ball of muscle beneath my sternum. Skippy didn’t listen. It didn’t stop me telling it ssshhhhhh, it’s alright, over and over again. I was too wired to sleep. So I put in my headphones, and listened to Bastille’s Pompeii on repeat, because from the first time I ever heard that song, it has never failed to calm me down. I haven’t had a night like that in a very, very long time. It was draining. I was scared by it, stunned. I hadn’t expected it. I woke up almost afraid to stand.

With my heart in such a state, I naturally began thinking about the consequences. My exams start next week, and I would be in no state to sit them in my current situation. Then what happens to my third year of uni. Come to think of it, with a heart like that, how would I ever get a job? I wouldn’t be able to go for a walk, and I’d certainly never run again like I dream of being able to do. And my thoughts frantically raced around my brain trying to find something that might be unaffected, and there was nothing. Skippy has a hold of everything, and when he rebels, I lose it all. So I was searching for something to wake up for, to carry on for, to motivate myself with… And I just watched everything slipping away. Stupidly,  I couldn’t find anything left. I was so tired. With all my health issues. But mostly with the idiot inside of my chest. Skippy in his current condition isn’t going to kill me, he’s just “limiting your life” in the words of my cardiologist (which tells me that there isn’t really any reason to be significantly bothered because hey, the thing could be about to kill me and it isn’t). But still. I ground to a halt.

And then this morning, at 10am, with Skippy still shaky and determined to misbehave and me trying and failing to focus on revision through his aches and grumbles, I got a message. Two tickets to see Bastille at a pretty small gig. Me and Portsmouth Uni Friend. HK Uni Friend adamant that I would not pay a penny for my ticket. I was, and still am, astounded by their kindness. Completely. Astounded. In fact, it all seems a little surreal. They simply said I needed a reason to be happy. They said I deserved it. They said my life was unfair. I don’t deserve such awesomeness, and there’s nothing unfair about my life at all; in fact, I’d rather me go through all of this if it means that somebody I know or care about doesn’t have to go through it in my place, and I am frequently thankful for that fact because I think that’s… Fair.

And now there’s something to look forward to, something Skippy can’t take away, because even if I have to crawl, I’m going. My friend pretty amazingly said that even if we go and I end up unconscious (as I did on my birthday when we went out), it will be entirely worth it. And that’s pretty much my view. Skippy is wrecking a lot of things at the moment, and right in the middle of the void that has created, there’s now something to aim for and look forward to and… Be on the planet to witness. A calm, right in the middle of the storm.

And that’s all I needed. Something to look forward to. Because nothing seems bad anymore. I have perspective again. I’m sat here with Skippy still being an idiot, waiting for an arrhythmia nurse to call and… I’m lost in this awesome little bubble of happiness where fear cannot find me. I have something that makes me feel 21 again instead of 80, and I kind of live for moments like this. Where normal 21 year old things happen. I just suddenly have this overwhelming feeling that things will be ok.

It all works out in the end, I guess.

You don’t appreciate solid ground until you’ve been lost at sea.

(Also, yes the title of this post is also that of a Bastille song. Very fitting today. My friends are… well, I don’t deserve them at all, but they mean the world to me).

Not What We Expected

“But if you close your eyes

Does it almost feel like nothing changed at all?

And if you close your eyes

Does it almost feel like you’ve been here before?

How am I gonna be an optimist about this?”

Bastille, Pompeii 

“There’s a pain in my heart and a pain in my chest

I wanna feel human again

There’s a pain in my head and I’m losing my breath 

I wanna feel human again

Human again”

Kodaline, Human Again 

As I laid in the CCU after 6.5 hours in theatres and just as many after that trying to shake off the anaesthetic enough to remain awake, these are the songs I played. I had prepared myself for outcomes at either end of the spectrum: new me or no me (fixed or dead, basically. Improved or killed). I hadn’t been prepared for the in-between. I hadn’t been prepared to wake up in recovery to the nurses discussing my tachycardia, and manage to hold on to enough waking moments to look up at my ECG trace and find my heart was just as grumpy as before. Before the anaesthetic snatched me back to (a far less deep) sleep for a few hours, I thought just long enough for my heart to sink. My consultant bumped into my mum on her way to the CCU as he was leaving the staff changing rooms, having swapped his surgical scrubs for his suit again. He told her some of it was guesswork, and that the last resort part/ all of it may need to be repeated. The next morning a doctor I hadn’t met before looked at the 10 lead ECG I was hooked up to and told me the surgery hadn’t worked. I’d need it again. Just like that, like it was nothing. I already knew. To them it’s just everyday, they get to walk away from it, they get to switch off from it, shut the door on it, walk away from the consequences. But to me… this is a disproportionately. Big. Deal.

(Oh, in case you haven’t noticed yet, Skippy – my heart – has totally stollen this post… apologies for the boring medical nature of this post but… this is life, and unfortunately I couldn’t choose to live a different one so I could blog about something worth reading about. I hate this part of me, this side of my life, but it’s a huge part of my life and if you choose to read on then… thank you)

In 24 hours my body went through it all: the terror of being in a hospital (as the surgical team all lined up in front of me and introduced themselves one by one in theatre, I trembled with fear and told them I was simply cold. The consultant anaesthetist held my hand. One of the theatre nurses that wheeled me to theatre had PTSD and was awesomely understanding), an anaesthetic, keyhole heart surgery (including a new-ish procedure to try to modify/remodel part – or as they discovered, two parts – of my heart), acidosis on top of already low blood pressure post-surgically (yes, I went in for heart stuff and could have died of a different thing), bleeding from one of the four puncture sites they went in through that resulted in a lump the size of my hand forming under my skin, two raw and bleeding cuts at the back of my throat from the endotracheal tube (which hurt to an impressive yet unexpected degree and left me unable to talk for a while but now just hurts like someone has taken a cheese grater to the back of my throat) oh, and rather a lot of PVCs (extra heartbeats).

I made one nurse cry that night by telling her I’d planned to join a gym when I woke up, and that I’d bought myself running shoes for my 21st birthday that I promised myself I wouldn’t wear until it was safe to try and run in them. I almost cried as I told her I felt like I’d never get to wear them. We talked about me – about the past few weeks, about all my time in hospital, about how people walk away from that because they don’t know how to deal with it. She told me I was incredible and that she wanted to clone me. I pointed out that probably wouldn’t be the best idea, given y’know… me. She spent about ten minutes trying to get me to say I would use my buzzer if I needed anything and there was nobody about, because I felt bad asking for anything at all. So naturally I just… didn’t tell anyone. The pain was bearable so I wasn’t going to bother anyone for pain relief, and I could hold my pee for over an hour before I would guiltily murmur between profuse apologies that the dam was about to be breached. I’m terrified of medical people. These doctors and nurses were so nice though, they spent ages just talking to me, trying to relax me, telling me they were paid to be there for me and it wouldn’t annoy them at Allan’s could I please stop thinking of myself as a bother and let them be there.

Emotionally I was done as soon as I fully came round that evening. Even as they discovered I was in acidosis in the early morning, I still told them I was going home. I’d had a sleepless night of crying and flashbacks and fear. I felt disempowered and afraid and I was intimidated to the point I was almost too scared to speak to anyone medical. They didn’t really know how to manage acidosis (seriously, I had to tell them until the appropriate consultant appeared) so it was pretty easy to persuade them all was well a few hours later with no further blood tests.

After the surgery I got breathless standing up. I got breathless walking to the bathroom. My chest HURT even though they hadn’t had to go in through my chest (I was warned that if the whole keyhole thing didn’t work, they’d take the more direct route instead). Not too unfamiliar. Only, I hadn’t done anything. And I hadn’t gone in there like that, and this pain was in new places. I wasn’t worried by it, just annoyed at my heart. The doctor was all “well you did have heart surgery less than 24 hours ago… it’s going to be a little upset and sore while it heals itself.” Upset and sore it is indeed.

I’m home now, and I feel worse than when I went to the hospital, which I wasn’t prepared for at all. It’s nothing disastrous, just breathlessness even when I’m laying down (except I currently can’t lay flat, so it’s sort of… laying back against 5,000,000 pillows). My lungs feel heavy, but no amount of air can satisfy them. If I stand I get so dizzy that I become spaced out and stupid. Walking makes me pant like I’m sprinting. My abdomen has slowly increased in girth to the point that my tops are so stretched they get pushed up and off of it. My ankles overflow from my socks. My legs are ice cold from about halfway down my shins, my hands are so cold the “capillary refill” is more like a “capillary NOPE” etc. etc. I’m exhausted, and pretty surprised about that to be honest. Even though none of this is new, just… worse than before.

I’m disappointed with how things are right now because my expectations were miles off of this either way. I wasn’t prepared with even the thought of more of this, especially not to this degree. My Brian (ok autocorrect missed up but I rather love this typo. I refer to my brain as Brian anyway) hadn’t even thought of that as a possible thing. I knew it might not work, but I didn’t quite manage to carry that though on to the “I will still feel like poop” part of that realisation. The success rates of the new and more complex one of the procedures (the last resort we were trying to avoid) weren’t that reassuring on paper but people kept telling me I was going to wake up a new person with their hope and optimism. But hope and optimism give you further to fall in order to reach reality. And so I’m disappointed, but… I don’t feel it yet.

To start with in the hospital I was deflated. There were tears (partly due to the drugs, which made me very weepy, partly to do with the fact it was a hospital so my PTSD had a field day, and partly because it hadn’t worked). I just didn’t know what to do, how to be, where to go next in my life, what the point in anything was. That’s a difficult place to be and my body was too exhausted to let my mind stay there. The staff said they were sorry, as if it was there fault my heart is a rebellious idiot. I just laid there and had a brain-to-heart conversation in which I told it exactly what I thought of it. It had even played up during the surgery so that they couldn’t get access to a particular part of it; additionally, my heart taunted them, behaving beautifully until they went to do the second procedure, and then taunting them by being a little poop and immediately refusing to behave in the way they wanted it to. When they tried to remodel one region of my heart (part of the third, new procedure that we hoped we wouldn’t have to do but then decided we kinda had no choice) my heart decided to play a trump card and reveal another anomaly, but when they tried to get near it they realised that they were so close to my phrenic nerve that if they slipped and damaged the nerve I wouldn’t have been able to breathe again, and by that route they kind of had less control of what they were doing, so they had to stop.

So right now I’ve no idea what I’m doing. No idea how to be. Plenty of thought but no emotional response to those thoughts. No idea what to do from this point onwards. Can’t even comprehend the current situation because my brain hasn’t accepted it yet. Don’t know how or where to go from here. My mum keeps telling me to revise and care about the exams I have in two weeks, but I don’t even know where my brain is at, and when it comes back down to earth and the hopelessness I felt when I first realised the surgery hadn’t worked returns… it’s going to be hard to find the motivation to get out of bed. So now, while it’s all surreal and I’m stuck in an emotional void full of thought with no feeling (which really was a smart place for my brain to stick itself – dissociation is a great temporary coping mechanism, and I do it a lot) I am trying to get a life. By that, I mean I am sleeping a lot, trying to beat my body into submission by pushing it to do as much as it can until it rebels to the point that I give in, cuddling a Labrador a lot, sometimes making lecture notes, and eating ice cream (in the words of one person who saw it, my throat has been “cut to ribbons”)

But see, I will get my head around this. At some point the dust will settle. Kicking and screaming, time will drag me through and then back into the boxing ring for the next round. Everything ends – the good, the bad, the amazing and the hopeless. No way but through all of it, even when you want to stay forever, even when you see no way out or never want to go there at all. And that perspective, that important, grounding reality, will return to my brain. So I will leave you with the lyrics from another band whose songs have got me through a lot, whose lyrics I cried to on repeat in a coronary care unit until finally I stopped feeling (many of their songs spring to mind, but this one was written about having hope when there isn’t any so…)

“Falling in this great divide 

The earth it splits, and my feet on both sides

Though my faith is shaky


I keep on hoping (keep on hoping)

Keep on hoping (keep on hoping)

When it all feels broken 

Got to keep your hope alive
Falling in this great divide

The earth it shifts, and I’m on the other side 

And I swear the world is going crazy


But I keep on hoping (keep on hoping)

Keep on hoping (keep on hoping)

When it all feels broken 

Got to keep your hope alive”

X ambassadors, Hoping

And that was the song, right there. That was the song that got me through that night, that initial realisation, the fear (along with Bastille and some Imagine Dragons and other artists whose lyrical art has become an emotional lifeline for me through the hardest things my body and the universe have thrown at me).

Maybe I will start saving for a games console, and I can live as a healthy normal human in a video game.

In order to keep on hoping, I’m going to have to start. That’s something scary and difficult for me to do, because it opens you up to a whole world of let downs and hurting (mostly because reality is a complete boob).

Even if we tried and failed, we can try again. Another anaesthetic. Another gamble. Another chance. And if that doesn’t work, then I’m in a bit of a situation. But maybe at some point before then my brain might decide all is not lost. I just know that in the next couple of days I’m going to feel like the world ended, because it carried on exactly the same as it was. I just don’t understand. I’m right back in the situation I was so desperate to escape from, the situation I’d gladly have died on an operating table just to leave behind.

This is all far tougher emotionally than it is physically. Forget the health hiccups. It’s the emotion they kick up that is killing me.

Just In Case

I’m not writing now because I have anything in particular to say. I’m writing because the day after tomorrow, my cardiologist is going to do a pretty new procedure (new enough for Google never to have heard of it, and for it to be a last resort that he didn’t want to do on someone so young) which involves remodelling a small area of Skippy (my rebellious, idiotic heart)… if my heart behaves enough for him to progress that far (while I’m under anaesthetic other heart things are happening first). You’re probably expecting this post to be about that now. Which makes sense, because you probably expect it to be my number one topic of thought at the moment. It isn’t. It has been blown far, far out of the water by… words, actually.

Before you read this, I need you to know that my life is great. I know that. I know I’m lucky that my situation is not worse, and that there are plenty in ways in which it could significantly be so. I am frustrated that my mind is beginning to let other thoughts shout over that reality. Forgive me for letting that part of me write this post. I am already embarrassed by many elements of this post. Ignore it, if you will. (Oh and obviously, because that part of me wrote this… Trigger warning).

The day after I was due to have this surgery previously, just after I was starting to function after completely melting down about its cancellation, I opened the front door while home alone, and a serious crime was committed against me. I had several uni deadlines the next day, and my achievement of the century is that somehow (after being with the police until late at night, and sitting with a detective and then a counsellor) in 2 hours, I wrote 90% of a 1,000 word essay (which I’d admittedly had over a month to write, but my head has been BEYOND a mess, and I haven’t been great at… humanning… hence the complete lack of posts), referenced the entire thing and wrote the last 300 words within 20 minutes, and submitted it with 7 minutes to spare.

Three days later it all became real, and while my parents continued freaking out and buying security cameras and locking every door and window in the house (too late for me, no comfort at all, couldn’t take back what had happened), I turned into a MESS. It doesn’t matter how. It doesn’t matter how worrying or completely crippling my mental state was, or the things the mental aftermath of that crime stopped me doing (accepting human interaction, leaving the house, tolerating my own existence, to name just a few. Just talking about it to the police on the phone in the days afterwards made me shake with fear and fight the urge to vomit).

And I’d love to tell you I got over it, but it continued to eat me. And slowly, just as my world was starting to turn again and revision (I call it revision, but actually it’s trying to catch up on the 160 hours of lectures I have to make up by the 3rd of May when my first exam occurs) began to become an actual thing… I went to stay with an individual I can only describe as my idol. Family. But also a heroine. My idol, since I was 9 or 10 years old. And I was torn down with words. Three hours. Every element of my life, of who I am, was attacked. Mainly my health. My Achilles heel. And I was left… Empty (and writing a suicide note at 3am, a feat I’ve never managed to complete before. If a kind dog had not limped into the room to demand a cuddle and let me collapse into his fur hysterically sobbing, I may not actually have made it much further along the road of my life).

I can’t repeat the words that were fired at me. They attacked parts of me I don’t wish to share here, parts of me I hide (and so, were commented upon incorrectly and in a VERY damaging way). They were enough to cause outrage and horror among the few family members who I repeated them to, even parts of the half of the family I will never belong in (they all have blood and marriage, I have a deed poll). Enough for them to understand and not tell me I was an idiot when, 24 hours later, my attempts at words were still washed away by great sobs that I could not control.

My brother in law had cured my fear of all human contact with his greeting hug earlier that weekend, and, suddenly able to find comfort rather than terror in human contact, I found myself wrapped in my oldest sister’s arms apologising profusely for my tears (because I don’t cry) an awful lot, and being told they were more than justified and she didn’t even know what to say. And you’ll be all “oh for goodness sake they were only words”. But they were words attacked and destroyed and invalidated every part of me.

An individual I until that point idolised, accused me of making everything up to get attention – my health issues, the serious crime (even asked me if I had enjoyed it)… (and then told me they ignored either topic because they didn’t want to “feed me”). FYI, that’s so ridiculously absurd, because the police have forensic evidence, and also I’m not sure you can fake NEAR DEATH or want to experience NEAR DEATH especially when you have counselling for a phobia of HOSPITALS. That individual blamed me for everything, every problem within my parents’ household, despite that individual not living there or seeing anything they were commenting on. Told me I resented them for almost dying because it took attention from me (actually, it was one of the most traumatic periods of my life, because somebody I loved almost died, and I was old enough to know that, and too young to be told what was going on. I still burst into tears at any reminder of it even now – one of the few things that never fails to bring me to tears, because I was too young for people to realise it affected me, and I’ve never really dealt with it)… And it went on, and on, and on. And I had no emotional ground to stand on, nothing to fall back on, to rest against, to hold myself together. I was washed out. Empty. I had gone there to be by the sea (which was AWESOME) and be with my brother in law (my brain decided he was the only safe human in the world for some reason) and to heal. I had gone there because that home always felt like my own. It felt physically and emotionally safe because of my brother in law and the support I had received there previously from my heroine.

For a few days, I was suicidal. The person described to me was not one I felt deserved to live, I was told over and over in that three hour conversation that basically people would be happier without me (in different words, but that’s what my self-hating brain heard). All I could do was cry, and sleep. My appetite is usually far greater than would be expected for someone my size, but I couldn’t eat more than a few forkfuls of food. And then I went back to a really weird place. A place beyond the hurt. A far more alarming, more troubling place, in which even my counsellor couldn’t really reach me. I shut down. I couldn’t think at all. I couldn’t function. I felt heavy. I stayed in bed, I slept all day. I’d try to get out of bed and just sit on the edge, no thought about what came next, no thought about how odd that was, just… Empty. Stuck. No idea how to be. And so I’d just fall sideways and, feet still on the floor, sleep again.

I didn’t wash for an embarrassing number of days. Didn’t even change my clothes. Couldn’t eat. No work. Goodbye “catch up/revision” plan. Guilt. Which everyone around me fought to push out of my brain. People told me that my heroine had been wrong, so wrong, that she knew nothing, that nobody else thought that at all (my heroine told me that people would say that because nobody wanted to upset me). I knew it was all wrong. Logic told me that. But my self hatred was so much louder. And it wasn’t alone any more. In a family that I have never felt I fitted in, I found an individual who made me feel more unworthy of involvement in that family than I ever have before, and the whole time they kept saying it was because they cared. They had, until that point, been my heroine. They had also been a little odd with me for a while.

I was more hurt that anybody could even imagine the things that person said, let alone someone who I had, at one point, trusted. Someone I admired. But anyway, my self-hatred had an ally. And it felt like a lead weight. Days passed and I had no idea when or how time had gone by. I cried. I slept. I sat and tried to function. And I repeated that process over and over. I could not. I just could not.

My mum tried to shout some sense into me, telling me I was going to fail my exams if I didn’t do something, telling me that I couldn’t just do nothing. I looked at my dog, my furry rock, and I felt nothing. I looked at my everything and I felt nothing. At that point I sort of melted.

After 10 days of hollow heaviness, I went to stay with Auntie Godmother and family. Instantly, I relaxed. Nobody talked about the crime (although Auntie Godmother was MY ROCK via text message through the weeks beforehand). Nobody talked about what my idol had said (a constant topic of conversation in my parents’ household). I slept. I ate almost an entire meal. I made lecture notes. I came back. My dog was my everything again. Revision began to occur.

Among the chaos I also broke my foot the afternoon before the conversation happened. After what was said to me, I had to be forced to get it x-rayed, because on top of my terror of hospitals, I also didn’t want anyone to think I was “milking it”. The x-rays showed that there was a piece of broken off bone just casually floating around my foot. The physiotherapist who reviewed the x-rays said the black line through my bone was a blood vessel, and that I should come back if my floating bone caused a problem. Today, with the assistance of 31kg of Labrador and a misplaced paw, that piece of bone forced its way out of my foot. A consultant looked at the x-rays and today over the phone said I should go back. So that’s fun. I’ll do that at some point… After the heart stuff. Because I can only deal with one thing at a time.

I’m missing London like someone has ripped out my beating heart (ironically my heart surgery will take place in the heart of the city I love). I miss my uni friends (haven’t heard from most of them, but that’ll be exam stress and my absence both… doing their thing). Seriously though I have never missed a place so much. It’s home. I miss wandering around it every afternoon, or late at night. I miss everything about it. I miss that skyline out of my window. I miss the buzz. I miss the miserable people on the underground. I miss laying in Hyde Park and wandering along the Thames. And I won’t get to live there, because while I was physically and mentally fighting to stay alive, I was out of sight, and my friends have arranged to move in together. And I cannot live alone (not safe, also now terrifying).

I’ve spent the last few days looking forward to Wednesday 19th of April for a very different reason than I did the previous surgery date (oh yeah, they also cancelled the surgery to remove Cedric – growth that bleeds a lot and needs OUT – because I’m too high risk to have an anaesthetic until my heart is… less of a poop. That was meant to happen last week). There is a 50% chance that, if everything goes right, this procedure will change my life. There’s also a chance it will damage my heart and leave it needing a little assistance. Before, I was planning long runs and dreaming of being able to walk from room to room without getting breathless, or without coughing pink froth whenever I lay flat, or without not being able to wear ANY of my clothes because my abdomen is so swollen with fluid… But for the past week or so… The thought of that cardiologist slipping… Has been my only comfort. Because I can’t do this anymore.

My conscious mind may forget to be scared that I won’t wake up, to juggle the stress of trying not to die (which, FYI, is a battle I frequently almost lose); on the surface I might not be thinking about how my health is so volatile it could take my life in a very short period of time whenever it feels like it, all day, every day. But the existential crisis goes on beneath the surface. It burns away silently. Along with the family stuff, and the uni work, and just the normal stresses of being 21, and knowing I will need somewhere to live, and feeling homesick but not knowing where home is, and only having £480 to live on until September because they cut my student lone since I moved to my parents’, and feeling like a burden, and watching my friends grow more and more distant, and LONGING to run again; also the insomnia and the PTSD about HOSPITALS from when I was younger, and the nightmares, and the wasted days and months that I lose to my health and hate myself for letting it steal… And it isn’t a lot, and unless you live with something that could kill you any time it likes, any day it feels like, or you’ve lived every moment of my life from my viewpoint, then you won’t entirely understand (but can potentially/at best relate to elements of it – because I never disclose enough information for full understanding of the… non-health stuff, which ironically is actually the hardest for me to deal with). But it all rumbles away in the background and it’s just… Broken me. How pathetic is that? How pathetic am I?

I guess I’m writing because part of me hopes this really is one of the last opportunities I will ever get to write again. I feel this great need for the people I know to be saved from me. And I don’t have the guts to do something about my existence myself. My body survived so many times when it shouldn’t have (I mean, I was in acidosis a couple of nights ago giving myself IVs and actually thinking that was it), but my mind… My mind is missing in action. Along with me.

If this surgery gives me back my life… If I go to sleep and 7 hours later (or more) Skippy has been persuaded to co-operate… I have no idea what to do. I won’t even let myself think there this time, because when that hope was taken away before I had been relying on it so heavily that I crumbled.

I’ll take either outcome, is what I’m saying.

A new beginning or an end.

I’m not fussy any more.

And whether Wednesday is the end or not… There’s no way but through how I feel right now, through states like this. There’s always another side. And if the other side sucks, ride with it, because there’s no way but through that too. We don’t have to find our own way. We never even see it coming. Just one day, we’re suddenly stood on the other side looking back. Reeling. Wounded. Facing whatever comes next. Good stuff, bad stuff, it all falls away because there is never any way but onwards, somehow. Unless you hold on. And right now… I can’t let go. I can’t let go of the hurt. I cannot find a way. But a silenced part of me knows… there will be one, even if I can’t even imagine it.

I don’t even have the energy to filter what I do or don’t spill out into this post. So I’ll probably at some point regret writing it as much as you regret reading this far. But thank  you all. For the support I receive here. For the comments that re-connect me to humanity a little bit, and the awesomeness of the blogging community – the nicest collection of people I’ve never met.

Blunt.

This post is less interesting to read and more… Life. There is an expectation for me to post, and absolutely no desire to do so on my part. I’m prioritising my attempts to get a life (which, after my birthday for a brief period were going extremely successfully). Things are tough right now. I’m going through a lot, and I have needed, and continue to need, space to fall apart and re-assemble into a human that can deal with this situation. Forgive me for that (and probably for the standard of this post). Also, trigger warning (I’m getting so sick of writing that so sorry if you’re sick of reading it).

My birthday was great. Seriously, it actually was. My smile was genuine for the first time in months. I was given the present of human presence, and managed to gather six other humans to join me for a meal out in Covent Garden (London), and then a trip to a gelato place (where I had the most delicious crepe ever and they cut the ice cream into the shape of petals so it looked like a rose in a cone) and then a slow stroll along the Thames. Many photos were taken by my friends so I have memories to hold on to. I have never laughed so much in my entire life. I felt 21. I was with people, I was back where I loved to be. I felt like I mattered but could not comprehend why… And I was so stunned I just couldn’t believe it was real. 

So reality hit me. Or rather, Skippy (my heart) teamed up with reality, and I was rendered unconscious on the London Underground at a tube stop that means both uni and (until the new year) home. I was beyond devastated. My heart was being an arse, basically. As the paramedics wheeled me through the ticket barrier before carrying me up two more flights of stairs, I made them stop so I could tap out my Oyster card. This was, and still is, the achievement of the year for me. After the paramedic telling me that if he let me out of his ambulance my heart would probably stop and he’d just be following me round London all night scraping me off the floor (he also told me I’d just have to have a second birthday and do it all over again just without the hospitals), I ended up in A&E with three of the best humans to be in A&E with. They stayed, they entertained, they made me laugh, they calmed me down. They went out and brought back McDonald’s at 2am. They were totally chill. 

My heart was totally not, but that was fine because my surgery is on the 22nd, so I was told I really did need this procedure, and to take it very easy until then. This procedure, if it works (50% chance) is going to change my life. The reluctant and cautious hope that this slow and involuntary realisation injected into my mind, filled the cavernous void of nothing that had opened up within me. And there was suddenly… A point. There was a point to me again. There was a point to existing, or at least, to resisting the urge to terminate my existence. There was a purpose for every action. Because there was a future. A chance at one. 

I’ll be able to attend lectures at university, I’ll be able to walk about without sleeping for six hours afterwards, and I won’t be worried about the ticking time bomb I feel lives inside of me. No more fear. Or at least, less of it. And maybe even at some stage, a chance at running… A chance at a life. A chance to be closer to normal than my heart has let me be for a while, instead of sleeping all the time and breathless and swollen and wheezing and unable to even lift my head sometimes. And that picked me up. For the first time since November, I was an almost fully functioning human. In three days I did 24 hours of work. I made lists and organised myself, and got into a routine. I started showering every day again. I cooked my food from fresh instead of buying something factory made. I let myself hope. I lost myself in this protective little bubble that surrounded me even in the tough times, warding off the worst and keeping my mind (and my mood, most of the time) intact. It was like having a force field and a superpower; a presence that I welcomed with relief. And that’s something I never let myself do.

It’s something I shouldn’t have let myself do. It’s something that is never safe. In letting myself climb and be lifted, I set myself up for a fall.

My surgery was cancelled last week. A “life or death” maternity case needs the slot. Two lives lost without it I guess. All of the above stopped. I lost myself in a void. I very nearly terminated my own existence. I very nearly drew my own blood. I sat in the darkness on the floor for three hours and cried. I lost everything, because I lost the hope I had accidentally been relying on and I was in no state to survive the fall. There’s a time when I probably would have explained my feelings here, explained why I was ashamed and guilty for attaching enough value to myself to feel upset at all and all the rest of it. But it still doesn’t feel safe to share here at the moment. Needless to say I have relapsed a little. Less so now. Denial is my home again. And it’s where I’m going to have to stay. My fellow third wheel and I are going to London tomorrow for the day – we’re going shopping and to see a film that he’s seen but that knows I really want to. We were meant for be going for a drink, but I can’t do that now. My entire family is against me going. If I go to walk anywhere or do anything they tell me to think of my heart. But life is about both mental and physical health, and I cannot just sit festering in my thoughts. 

I don’t want to be limited. I physically feel, and am being treated, like I just turned 80. I need to go places, see people, let my mind feel 21. Yes my birthday annoyed my heart, but I was on a knife edge and had been planning on ending my life. I’d go through all the heart drama again for another evening like that. When I’m thinking of other stuff, I forget that I’m scared, I forget that I’m lost, and I forget that I’m hollow. I hate my body right now. I’m angry at it. It’s all that people see, and now those people are joining forces and helping it to limit me. Every part of me rebels against that. I won’t stop everything, why should I? Because a cardiologist took away my hope? Should I die inside to stay alive? What is the point in existing if you have no will to live? I’d top myself before I ever made it to the 19th of April, without continuing my walks in the woods, and the chance to socialise (because this house is NOPE).

I was meant to be having surgery to remove Cedric (growth in my nose) on the 12th of April, and now can’t have that general anaesthetic, because my heart is an unreliable poop. Cedric has now grown to such a size that he obstructs my entire nostril, and is also pressing on a nerve, resulting in nerve pain that runs from my sinuses right through my face and down into my front tooth. Cedric was meant to be removed ages ago, and the surgery has already been delayed 3 times because of my heart. 

My body continues to rebel. Along with the new Cedric pain, Skippy has decided to intermittently hurt in ways he never has before. Through to my back, numb left arm, neck, jaw and then pain in my jaw… Accompanied by the urge to vomit and a tiredness so overwhelming I cease to function and then sleep for hours. I tell myself that I am an idiot, and it will stop, and that there’s nothing that can be done until that procedure (which can’t happen any sooner because it is such a complex case that it needs specialist people present)

And if they are rebelling, why not let my immune system join the show? Yesterday I changed my infusion set to find a small volcano in my stomach (a red lump with a hole left by the cannula in the middle of it which usually closes up pretty quickly). Grossness occurred, confirming my suspicions that somehow my immune system had allowed my subcutaneous tissue to be infected by a supposedly STERILE cannula inserted into a THOUROUGHLY DISINFECTED site. So I went to the GP today. I’m meant to have antibiotics at home because my immune system loves to welcome visitors into my body so often, but I ran out, so she prescribed me enough for my acute issue, and then some more to replenish my supply. She investigated the hard lump that has formed deep below the little volcano, and concluded that it was a collection of infected material and/or gloop about half a centimetre beneath my skin which was pushed much deeper by the cannula and has decided to set up home. If it doesn’t go down within a few days on antibiotics, or gets worse, it needs to be operated on. BUT… MY HEART + surgery that isn’t specifically for it = NOPE.

I’m dealing with normal life stresses. Family dynamics and issues that make me feel… like hurting just to replace the emotional pain with something that can’t last. Behind my health, I am a whole normal person, and most of the time normal life stuff is harder than being unwell. People forget that. I can’t talk about my emotions right now. They are… for my mind only (and my counsellor, a fairly recent and priceless addition to my life) and I cannot deal with being misunderstood right now. 

Reading all this, things aren’t even that difficult. I just no longer have the strength to remain resilient, and letting myself go through the process of feeling what my brain decides to feel stops me breaking down again. I’m trying to find my motivation. University are being absolutely amazing and offering me support that makes my life so much less stressful, so that makes it slightly easier for me to try and think about uni work. But honestly, all I can do right now is hug my dog and play Sim City and go for long dog walks with my surrogate mother (next door neighbour). I’m trying to get a life. But before that, I need to just figure out how to get to a place where I can start. 

I know it’s only four extra weeks until the surgery…

But 4 weeks is a long time to be scared.
Despite featuring in this post, my heart just isn’t in it. I hope you’ll all understand if I just stay away for a while. This just isn’t… Me, right now, and it’s hard enough trying to act more ok than I am on person, I just want to withdraw and just… Rebuild. Possibly. Because honestly, I’m on the edge of existing or erasing that existence right now, and I’d like to try and go with what’s right by everyone else, instead of what’s easiest for me. Which is going to take… Everything I have.